Scleroderma Research Foundation

What Scleroderma Research Foundation does

The Scleroderma Research Foundation (SRF) is a 501(c)(3) nonprofit organization founded in 1987 in San Francisco by Sharon Monsky, an entrepreneur who lived with scleroderma. It operates as the largest nonprofit investor in scleroderma research in the United States, directing 83% of its annual budget to research and operating with a professional staff of fewer than 20. SRF funds and facilitates scientific research aimed at improved therapies and a cure for scleroderma, a rare and deadly autoimmune disease with limited treatment options and no cure.

SRF's core offerings are research programs rather than commercial products. The CONQUER Registry, launched in 2018, is the first nationwide longitudinal patient registry and biosample repository for systemic sclerosis in the United States, with 1,300+ enrolled patients as of December 2025. The CONQUEST program, launched in 2026, is an international, multicenter, randomized, double-blind, placebo-controlled Phase 2 platform clinical trial for systemic sclerosis-associated interstitial lung disease (SSc-ILD), spanning 150+ centers across 25+ countries and evaluating multiple investigational drugs simultaneously. The GRASP Project extends research into African-American scleroderma patients. Supporting patient-facing services include the annual SRF Patient Forum, a webinar series, the SHAQ-RUQ annual health survey, and the SRF Carebox Connect clinical-trial navigation tool powered by Carebox.

The organization is 100% funded by philanthropy, with no commercial revenue stream. Donations are accepted through multiple mechanisms — online portal, wire transfer, stock gifts, cryptocurrency, payroll deduction, employer matching, donor-advised funds, and bequests — and the signature Cool Comedy • Hot Cuisine event has historically generated the majority of cumulative dollars raised (over $30 million of the $40 million+ raised to date). Go-to-market is community-led, anchored by the Cure Crew volunteer fundraising program and the #SayScleroderma social awareness campaign across Facebook, X, LinkedIn, YouTube, Instagram, TikTok, and Threads. SRF holds 4-Star Charity Navigator and Guidestar Platinum transparency ratings.

Name

Scleroderma Research Foundation

Legal name

Scleroderma Research Foundation

Website

https://srfcure.org

Company type

Private

Founded year

1987

Operating status

Operating

Headcount range

11–50 employees

Short description

The Scleroderma Research Foundation is a 501(c)(3) nonprofit founded in 1987 that funds and facilitates scleroderma research, operating the CONQUER Registry (1,300+ patients), the CONQUEST international Phase 2 platform trial, and patient-facing programs for the U.S. rare-disease community, funded entirely by philanthropy.

Ownership category

akta.pro rank

Product category

Medical Research Nonprofit Foundation

NAICS

Voluntary Health Organizations (813212), Grantmaking Foundations (813211), Scientific Research and Development Services (5417)

SIC

Services-Membership Organizations (8600), Services-Commercial Physical & Biological Research (8731)

akta.pro primary industry

Disease-Specific Research & Support (e.g., Cancer, Diabetes, ALS) (BPAGACAA)

akta.pro secondary industries

Health & Medical Research Grantmaking Foundations (BPAGAKAL), Research & Science Grantmaking Foundations (BPAGAKAI), Global Health Research, Evidence & Technical Assistance Organizations (HLAJAKAN)

Keywords

• Scleroderma medical research
• Rare disease research
• Patient registry services
• Clinical trial funding
• Nonprofit health foundation

Headquarters

HQ city

San Francisco

HQ country

United States

HQ region

North America

Offices1 record

Markets served

GTM type

B2C

Offering type

Services

Cost components

Technology or R&D, Personnel, Marketing or Sales, Operations, Others

Revenue model

1. Philanthropy and Donations: SRF is entirely funded by charitable gifts from donors. The research program is 100% funded by philanthropy. Multiple giving mechanisms: online donations, wire transfers, stock gifts, tribute/memorial gifts, employer matching, workplace payroll deduction, corporate giving, online fundraisers, donor-advised funds, cryptocurrency, and planned giving including bequests and IRA distributions.

Go-to-market motion1 record

Distribution channels3 records

Marketing channels6 records

Core offering

The Scleroderma Research Foundation is a 501(c)(3) nonprofit that funds and facilitates scientific research aimed at finding improved therapies and a cure for scleroderma, a rare autoimmune disease. Its core offerings include operating the CONQUER patient registry and biosample repository, running the international CONQUEST platform clinical trial, supporting genetic research (GRASP Project), funding investigator-initiated research grants, and providing patient education, resources, and awareness programs. The foundation is 100% philanthropically funded and operates the Cool Comedy • Hot Cuisine annual signature fundraising event.

Product overview

The Scleroderma Research Foundation is a nonprofit organization, not a technology product company. Its offerings consist of research programs and patient-focused services. The core research programs include: (1) CONQUER Registry - a nationwide longitudinal patient registry and biosample repository launched in 2018; (2) CONQUEST Platform Clinical Trial - an international phase 2 platform trial for SSc-ILD launched in 2022/2023; (3) GRASP Project - genetic research focused on African-American patients; and (4) SHAQ-RUQ Survey - an annual health and resources assessment survey. Supporting services include the SRF Patient Forum (annual online educational event), Webinar Series (free educational webinars), SRF Carebox Connect (clinical trial matching via Carebox partnership), and SRF Merch Shop (awareness merchandise via Print Your Cause). The organization also funds research grants and operates Centers of Excellence at Stanford and Johns Hopkins.

Differentiator

Problem solved

Functional benefit

Brands

• CONQUER Registry: COllaborative National QUality and Efficacy Registry - the first nationwide longitudinal registry for scleroderma patients in the United States, launched in 2018.
• CONQUEST
• GRASP Project
• Cool Comedy • Hot Cuisine

Products and services

• CONQUER Registry A first-of-its-kind nationwide longitudinal patient registry and biosample repository for systemic sclerosis (scleroderma) patients. Collects clinical data, blood samples, and patient-reported outcomes to track disease status, complications, treatments, and outcomes over time, with 1,300+ patients enrolled as of December 2025. For scleroderma patients and the research community.
• CONQUEST Platform Clinical Trial An international, multicenter, randomized, double-blind, placebo-controlled, phase 2 platform clinical trial for systemic sclerosis-associated interstitial lung disease (SSc-ILD). Evaluates multiple investigational study drugs simultaneously, with over 150 centers across more than 25 countries. For scleroderma-ILD patients and clinical investigators.
• GRASP Project Genome Research in African-American scleroderma patients. A research collaboration aimed at discovering genetic variations in African-Americans with scleroderma to better understand disease biology and tailor treatments. For researchers and African-American scleroderma patients.
• SRF Scleroderma Health and Resources Survey (SHAQ-RUQ) An annual survey combining the Scleroderma Health Assessment Questionnaire (SHAQ) and Resource Utilization Questionnaire (RUQ) to capture healthcare experiences, daily challenges, and caregiving needs of scleroderma patients. For scleroderma patients and researchers.
• SRF Patient Forum An annual online half-day forum featuring educational sessions on scleroderma symptom management, new developments in research, and clinical trials, with live Q&A and interactive activities. Free for scleroderma patients, caregivers, and the broader patient community.
• SRF Webinar Series Free online webinars co-hosted with leading clinicians and researchers providing education on scleroderma health, wellbeing, and the latest updates in research, treatments, and disease management. For scleroderma patients, caregivers, and the patient community.
• SRF Carebox Connect
• SRF Merch Shop

Quantifiable outcome

• 83% of annual budget devoted to research
• +2 more outcomes

Named customers1 record

Segments2 records

Ideal customer profiles3 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Feature3 records

Partnerships

Twelve partnerships are on record, tiered core and minor.

• AbbViecoreStrategic or Co-development PartnerIndustry partner supporting SRF's research and mission to find a cure for scleroderma.
• Boehringer IngelheimcoreStrategic or Co-development PartnerIndustry partner supporting SRF's research and mission to find a cure for scleroderma.
• MerckcoreStrategic or Co-development PartnerIndustry partner supporting SRF's research and mission to find a cure for scleroderma.
• NovartiscoreStrategic or Co-development PartnerIndustry partner supporting SRF's research and mission to find a cure for scleroderma.
• RegeneroncoreStrategic or Co-development PartnerIndustry partner supporting SRF's research and mission to find a cure for scleroderma.
• Bristol-Myers SquibbcoreStrategic or Co-development PartnerPlatinum sponsor of the 2026 Scleroderma Patient Forum, supporting patient education and awareness events.
• Global GenescoreStrategic or Co-development PartnerCommunity partner - rare disease advocacy organization collaborating to empower patients and advance research.
• NIAMS (National Institute of Arthritis and Musculoskeletal and Skin Diseases)coreStrategic or Co-development PartnerGovernment research institute partner supporting scleroderma research efforts.
• Pulmonary Fibrosis FoundationminorStrategic or Co-development PartnerCommunity partner collaborating on ILD Day Consortium to address interstitial lung disease in scleroderma patients.
• Rare Disease Diversity CoalitionminorStrategic or Co-development PartnerCommunity partner working to address health disparities in rare disease communities including scleroderma.
• Print Your CauseminorChannel Partner/ Reseller/ DistributorPrint-on-demand platform that handles all production and fulfillment for SRF Merch Shop. SRF receives no profit from sales - items sold at cost for awareness raising.
• CareboxminorChannel Partner/ Reseller/ DistributorClinical trial navigation platform partnership providing SRF Carebox Connect to help scleroderma patients find relevant clinical trials based on their condition and location.

Scale indicators7 records

Recent moves7 records

Expansion highlights6 records

Emerging players

• Pulmonary Fibrosis Foundation: Disease-specific nonprofit focused on pulmonary fibrosis, including SSc-ILD as a major subtype. Existing partnership with SRF on the ILD Day Consortium makes it a direct collaborative peer in the SSc-ILD space.

Direct peers

• National Multiple Sclerosis Society: A large autoimmune disease research nonprofit supporting MS research, patient services, and clinical trial engagement. Comparable in combining research funding with patient community outreach for a chronic autoimmune disease.
• Lupus Foundation of America: A disease-specific research nonprofit for lupus, another autoimmune disease with overlapping patient populations and research communities. Comparable in mission, fundraising model, and disease rarity.
• Cystic Fibrosis Foundation: A leading disease-specific nonprofit that funds and accelerates cystic fibrosis research, including a nationwide patient registry and clinical trial infrastructure. Highly comparable to SRF in mission, model, and registry/trial approach.
• Michael J. Fox Foundation for Parkinson's Research: The largest nonprofit funder of Parkinson's disease research, leveraging celebrity-driven fundraising (Cool Comedy Hot Cuisine's model of celebrity engagement aligns directly). Operates research programs and consortia similar to SRF's CONQUER Registry.
• Muscular Dystrophy Association (MDA): Long-standing disease-specific research nonprofit supporting muscular dystrophy research through grants, research infrastructure, and patient services. Comparable in operating model and historical use of celebrity-driven fundraising.
• Juvenile Diabetes Research Foundation (JDRF): Disease-specific research nonprofit funding Type 1 diabetes research with a similar model of philanthropy-driven research funding, patient registries, and industry partnerships.
• ALS Association: Disease-specific nonprofit funding ALS research, supporting patient services, and advocating for people with the disease. Closely parallels SRF's model of combining research funding with patient community engagement.

Broad incumbents

• National Organization for Rare Disorders (NORD): Umbrella rare disease advocacy organization that supports disease-specific foundations including those focused on scleroderma. Provides grants and research infrastructure that complement SRF's mission.
• Arthritis Foundation: A larger, broader nonprofit covering multiple rheumatic and autoimmune diseases including scleroderma. While scleroderma is one of many focus areas, it serves overlapping patient populations and shares research priorities.

Market position

Strengths4 records

Weaknesses5 records

Competitive moat5 records

Key risks5 records

Key highlights7 records

Customer concentration

• Xx.com/srfcure
• YouTubeyoutube.com/channel/UCsTzCavzIctmsu6i7Hm-gLg
• Facebookfacebook.com/111437305535666
• LinkedInlinkedin.com/company/scleroderma-research-foundation
• Instagraminstagram.com/srfcure/?hl=en
• TikToktiktok.com/@srfcure

Compliance1 record

Revenue estimate

Valuation estimate

Number of profiles

Profiles21 records

Funding overview

Funding rounds

Investors

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M&A

Investments

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Frequently asked questions about Scleroderma Research Foundation